Random thoughts from a severe preeclampsia survivor and two time NICU mom who passionately believes in helping to find a cure for her daughters' genetic disorder: Alpha-1 Antitrypsin Deficiency.

Friday, June 15, 2007

Personal

Yesterday one of my Alpha acquaintances said, "Jen, you can't take this personally." Before I address why she said that, I'll rewind a bit.

Last weekend, I attended the Alpha-1 Association National Education Conference in the Washington DC area. Every year, I attend this conference, and every year, I eagerly anticipate the conference. I suppose I'm waiting to hear about the latest break through in research or the latest idea for a cure. You know. The one thing that will make Alpha-1 a moot point in our lives. Hey, denial ain't just a river in Egypt.

When Grace was diagnosed about three weeks after her birth, I began a lifelong journey to learn about anything related to Alpha-1. First I found out how the genetics of Alpha-1 applied to our family, next I learned about the liver and its processes where Alpha-1 is concerned, and then I began to understand how the lungs are impacted by a lack of Alpha-1 protein circulating in the blood stream. This is all information that makes me giddy at times. It is a sort of quest for me, and honestly, it is probably unhealthy at times. In any case, it is a way for me to cope with Alpha-1 in our lives. I can't control Alpha-1 so I try to control my knowledge of it. Alex, I'll take Alpha-1 and how it impacts Jen for $500. (Get your Jeopardy hats on people.)

So the conference is the pinnacle of my quest for Alpha-1 knowledge each year. It is the height of my excitement, which is why I crashed so hard at this year's conference. Alex, I'll take Alpha-1 and how it makes Jen's emotions spiral out of control for $1000.

This year's town hall meeting of Alphas, who belong to the Alpha-1 Association, was what I'll call "fire works." I'm not entirely sure why, but in my observation, there was a distrust that emanated from about 1/4 of the attendees. Honestly, it was a bit shocking to me. I see our employees advocating, assisting, communicating, educating, and loving our membership every day, but most of our members don't see that. I need to remember that fact.

What made it hard was that some of the dissenting opinions came from people I sit next to at support group meetings month after month. Before I go too far, I'd like to reiterate that all opinions are allowed. Questions are always welcome. I'm glad our members asked questions this year.

So, why were my emotions like TNT just waiting to be lit? I'm damn good at keeping Alpha-1 at arm's distance...close enough to understand in detail from a clean, clinical perspective, but far enough away to keep its dirty little secrets out of this mother's heart. The town hall meeting discussion unveiled some of the darker sides of Alpha-1 for me.

It revealed a newly diagnosed Alpha, who clearly was struggling with her diagnosis. She trembled and shook as she emphatically said, "I'm not for sale. We're not for sale." Tears streamed down her face as our members discussed how some of the pharmaceutical companies conducted business within our community. Her demeanor made me painfully aware of how it must feel to be considered a "sales opportunity." I'm grateful that Alphas have a treatment, which replaces some of the Alpha-1 in their bodies. It is a miracle that it is available, but it is also sometimes a curse. Pharmaceuticals make a lot of money off of our patient population. It is business, but yet, this is very personal for our membership. They are fighting for their lives.

I have a mental picture in my head of how my girls will look as adults, and well, it was like the ghost of Christmas future was morphing the woman into one of my daughters. It made me sick to think of my girls sitting in a room feeling disenchanted, alone, and without support.

Yes, I know that Grace and Meghan are doing great right now. Yes, I know that there is a lot of time between now and the future. Yes, I should live in the moment, but that day, I couldn't.

Denial often keeps me in the here and now, but that day, my defenses were weakened. It seemed I wasn't the only one, which does help me to feel less alone.

Alpha-1 robs people of precious time and breath. My hope is that our community can rally around itself. Life is simply too short. Now is the time to gather together and find a cure!

I take this very personal. I can't separate myself from Alpha-1. It is always there lurking in the genes I helped give my daughters. Nobody knows what will be, but I think I have a good mental picture of what can be in our community.

I think I should somehow draw that picture and frame it on the wall. I'll call it Alpha-1 Utopia.